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  1. #1
    ICN Member
    Join Date
    Apr 2014
    Posts
    91

    Has Interstim worked for anyone??

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    I've been through all the meds and botox, which I don't think is doing much, so dr says my last option is Interstim. It sounds costly and complicated and it doesn't appear that a lot of folks find it helpful. Is there anyone here who has had success with it? My symptoms are frequency and constant urgency.

  2. #2
    ICN Member
    Join Date
    Mar 2003
    Location
    Ohio
    Posts
    78

    Re: Has Interstim worked for anyone??

    I've had an Interstim since 2006. You don't hear about the success stories, because we rarely look at the boards after we feel better (my opinion).

    I had a complete success with my Interstim. I went from going to the restroom every hour while awake & every 2 hours at night, to only going every 2 - 3 hours while awake and only waking up once each night. Before Interstim, I had 24 hour urgency that was pretty severe. The only way I knew I had to "really go" was when the pain & pinching sensation got too severe. After Interstim, the urgency is gone maybe 85 percent of the time. I still have flares, but only one or two a month and much less severe than before. When I had my trial, I went to the Cleveland Clinic, which is about a 4 hour drive from home. Riding in a car was always very bad for me with at least hourly stops. But we chose to drive home after the trial & my husband actually had to stop about 2 hours in because he had to go! I didn't feel any need to stop, but of course, I did go ahead and go. So I only went once on the 4 hour drive home. I knew then it would be a success. The surgery was painful and recovery took a while. I couldn't sleep on the side where the implant went for many months. But I work in an office & went back to work in about a week (if I remember correctly). The implant site in my hip ached for a few months and it was probably a year before I could bump it without it being sore. (The original implants were larger than the new ones). I have a 5 inch scar on my hip and they cut the same place to replace it. So it's really not pretty. But, I'm 42 and have been married for 22 years, so I can deal with the ugliness.

    My original Interstim lasted for 7 years and had to be replaced last year due to battery failure & stripped wires. Some of the plastic was off of the wire and it was causing some shocking sensations. The new implant is quite a bit smaller and rarely ever aches. It was uncomfortable to have replaced, I won't lie. The wire had to be replaced because of the damage and they had to "dig" a little to get the lead out to replace the wire. From what I understand, that is rare, usually they just replace the unit and don't have to replace the wires. The new smaller units last 3 - 5 years, so it will have to be replaced sooner than the last.

    Overall, I love it. My life has completely changed. I am mostly normal..I went to Disney World several months after I got the original implant and was able to ride roller coasters! Now, I have flares and some problems maybe once or twice a month. Before, I only had a few good days a month.

    But, it is serious surgery and should be thoroughly researched. And if you really consider it, find a doctor with a lot of experience, not someone that's only done one or two.

    Good Luck! Let me know if you have any questions, I'd be more than happy to answer.

    Jenel

  3. #3
    ICN Member
    Join Date
    Apr 2014
    Posts
    91

    Re: Has Interstim worked for anyone??

    Thanks for the story, good to hear this has worked for you. I'm doing a trial on 3/10, so keep your fingers crossed for me!

    Moderators, you may want to move this thread as I think I posted in the wrong category. Thanks.

  4. #4
    ICN Member rjyoon's Avatar
    Join Date
    Mar 2002
    Location
    Rocky Mountain region
    Posts
    476

    Re: Has Interstim worked for anyone??

    Interstim has helped me with frequency, so I sleep better. There are some drawbacks, but they are manageable. I'm now on my second unit, and as it has the smaller battery, will have to have it changed again in 2016.
    IC & fibromyalgia since ~'77. Osteoarthritis since ~'88. Idiopathic Thrombocytopenia Purpura (autoimmune blood disease) since '96. IBS for who knows how long. Interstim implant 2/04, revised 6/06, replaced 11/12 & again in 9/17. Antibodies to thyroid since at least '92 (finally diagnosed & treated 1/06). Asthma & vocal cord dysfunction 12/06. Hypoglycemia '07. Perimenopausal at 37, menopause at 45. Pituitary & adrenal failure. Osteopenia. Grade 3 sacral fracture by S3-S4 at age 12, healed 14mm out of place.

  5. #5
    ICN Member
    Join Date
    Apr 2014
    Posts
    91

    Re: Has Interstim worked for anyone??

    Thanks good to hear another success story. Urgency and frequency are my main IC symptoms and they've driven me up the wall for years.

  6. #6
    ICN Member
    Join Date
    Apr 2016
    Posts
    10

    Re: Has Interstim worked for anyone??

    I'm headed in that direction very soon. I even consulted with a URO about it this week. thanks for the success stories.

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